It's really not "Them and Us"

This last few weeks has set me thinking about a few things. I did some training at work around Growth Mindset that opened my eyes to some behaviours that I realise are not only not good but completely counter productive and ultimately destructive. The depressing thing is that I noticed many traits in myself and so I began to make a conscious effort to challenge myself. Challenging others has never been an issue for me but there is one of the issues in itself. 

Earlier this week @ParthaKar posted yet another thought provoking blog about diets and shaming (http://nhssugardoc.blogspot.com/2018/06/diets-and-shaming.html) well not exactly. I have a tendency which is sometimes good sometimes bad of condensing things I read down into a simple message that I can absorb and take to heart. What I took from his blog was this "Don't be a dick, accept others for their skills and their passion and respect them and their opinions as you would have them respect you". I apologise to Partha without reservation if I completely missed the mark but that is what I took away from that post. It did however set me thinking on something larger that had been floating around my mind for a while in any case and I will try to put that across here, though likely not very well since I am a marginally okay engineer and not a wordsmith.

I'm going to focus on diabetes care, since this is an area I have a strong vested interest, though I think that what I am trying to put across can maybe be expanded to many other areas. I tend to have untidy and messy thinking that way.

Since I was dropped into this world there have been things that struck me, some of it language, some of it attitude and others.. well I really can't describe it. The #LanguageMatters tag goes a long ways towards crystallising it. While we say that it is Language that matters I think the key thing to realise is that language is a manifestation of thoughts. It is the thoughts that are behind the language that we are trying to get at. Since directly altering thought is tricky, not to mention messy and possibly illegal, lets stick with language since it turns out to be a two way street. While thought dictates language so language has a way to guide and inform thought. Yes us humans really are quite a confused mess even if we think we are above such things.

The greater thrust of the #LanguageMatters movement is focused on getting HCP's to treat us PWD's like people and talk to us as such. Telling us we are "non-compliant" or "failing to meet targets" or "getting bad numbers" has many many poor connotations. I should say that I wholeheartedly agree with the movement and where they are trying to take things. I think in the early days of my diagnosis getting more encouragement and praise for the good I had done and help where I was falling short of the desired targets would have helped a lot. The scare stories did nothing but demotivate me and leave me with a feeling of "why bothers I'm screwed in a few years anyway".

Though as I said before us humans are a messy and disorganised bunch, so I got to thinking that maybe #LanguageMatters works the other way too?

I mean think about it. In an ideal world, you would walk into your annual review, get praise for all the things you improved on then be asked what could be done to help improve where things were not so good. You would then ask for all the latest toys, widgets, tech, drugs, magic "cure" and your Dr would absolutely hand over everything you asked for and 100% support every single bit of it. Awesome right? But the world is all about balance and compromise so you don't get that. You have to muddle through with a sub-optimal set of tools and your poor Dr has to try and support you the best he/she can. When I started to think in this was I cast my mind back to some of my past interactions with HCP's and realised what a prize as*&£e I had been on those interactions. they were fighting the same fight that I was trying to fight but they had their hands tied by policy, guidance or budget restrictions.

Yes the latest great diet idea may work but the risks haven't been fully assessed so it cannot be broadly supported. Well hey, guess what... you as the PWD actually has a huge amount of control over what you can do with the tools you have, free will is great that way! I'm not condoning full on wild-west but if you have the tools and skills to try something different and understand the risks, by all means try it. Feed it back to your Dr / DSN they will likely be as interested as you. But remember they are judged by a different set of standards and rules to you. This can have far reaching consequences to their life and chosen profession. So that's another consideration.

You are looking after you and only you, (unless you are a parent or carer obviously) while they have a larger target to be concerned with and they have measures and kpi's that they are judged on. You may feel like crap when you have worked yourself silly and gotten your A1c from 8% to 7% (which IS great work BTW) but your Dr/DSN will have to look at this and assess the risk while also being really happy that you are making their clinic look awesome. Yes you have done great but if you are having loads of hypos that scares them! I know that I have gotten blasé about hypos but that is just what I have learned to live with. The thing is that your HCP is looking at your achievements through a whole host of other targets and guidelines and filters that they need to consider as well as not necessarily fully understanding how smart you are at doing your calculations ot how good you feel your hypos. It's an imperfect system but that is how the world is.

The thing in all of this (yes I ramble on) is that they are looking out for your best interests in the best way they can with the tools they are able to provide to you. And that I think is where I am trying to go in this, we all want the best tools and HCPs would love to give us the best tools... that will make their lives simpler in some ways and a complicated mess in others, but if it helps us then I have no doubt they will do their utmost to accommodate us. And that's the thing... I say #LanguageMatters and yet even through all of this ramble I have spouted "them" and "us"! We are a team but we get these lines and constructs drawn between us all!

Oh those people haven’t done DAFNE, oh they are on MDI while these people are on Pumps. These are the HCP's that have T1 while they are the "Healthy" HCP's. It's all, for the most part, artificial constructs that we have drawn up to break ourselves into separate tribes when in reality we are all out for the same ends. Granted some are at the bleeding edge, bleeding while others are trying to hold the shields and stem the flow as best they can. We're all on the same side and I think as soon as we can all start to see that #LanguageMatters from all apparent sides the better we will all do at fighting the fight that matters.

I will be doing my best to talk to my HCPs as equals as best I can and try to encourage the same in reply. In essence I will try to have an open and human conversation where we share knowledge, tools and strategies on dealing with a common enemy. I will fail at times I am sure but I would like to hope that the effort will be appreciated. As soon as all of us, PWD and HCP of all disciplines and treatment opinions can start to treat each other with respect and dignity and realise that while we may have different views and opinions on how to fight the battle we are all still fighting the same war but on different fronts, and what works one place may not another.

This whole them and us, be that HCP's vs PWD, Pumpers vs MDI, Finger stick vs CGM, Libre vs CCG (okay that last one I may relent since I still get antsy when arguing with budget vs clinical outcome types) it really all doesn't matter. It is not an excuse for us to be a dick with the person in front of us that really wants to help or meet their treatment targets. We all of us are fighting a small battle that is part of the same greater war and we will not win if we are too busy fighting with each other.

Okay.. done... silly long ramble finished... I'll just leave it here for now and hope that I made some of you take a breath and think about "the other person" in your particular T1d relationship.